Agenda this Friday 25 May 2018
Some key members will be at the PCFA Community Conversations event in Melbourne.
Nevertheless, we will have a Roundtable this Friday
You must dial in - we do NOT dial you.
Landline - Anywhere in Australia - 25 cents
Phone numbers only in email. Problem? Contact Jim
From Victorian members, David Abrahams, Nev Black going to the PCFA Community Conversations event
Maybe you haven't had access to the agenda or you have late breaking news you would like to share. Tell the chairman here at the beginning of the meeting that you would like to speak, and he will fit you in - probably later, perhaps right now if that suits.
Roundtable - new stories, updates, questions
Any man who wishes is welcome to contribute here.
The Chair will declare the formal part of the teleconference closed at his discretion, perhaps around 11am. The teleconference lines will be kept open until at least 11:30 for anyone who wishes to continue discussions, update his health, or just chat.
Any topic you like - topics we didn't reach, something discussed earlier you wish to comment on, an update on your health, how your new boat is going, moaning about the weather, anything that you wish to say.
This Community does not give medical advice. No members are authorised to give medical advice. Ask your doctor if you hear anything here that you think may be related to your treatment.
9:30am - 11:00am Eastern Standard Time (Queensland)
The formal phone-in meeting ends after 90 minutes.
The lines are kept open for up to an hour after that for members to informally chat.
Daylight savings times
Sydney, Melbourne, Hobart: 10:30am Adelaide, 10:00am
Perth 7:30am Winter times Brisbane 9:30am
Sydney, Melbourne, Hobart 9:30am Adelaide 9:00am
Perth 7:30am Daylight saving ends first Sunday in April Daylight saving starts first Sunday in October
Mobile phone warning
The costs of mobile calls are nothing to do with the Advanced Prostate Cancer Support Group or with PCFA. They are between you and your phone provider (Optus, Telstra, Virgin, Vodafone, etc).
If you dial one of the capital city numbers given above from a mobile phone, the cost to you will be the cost on your mobile phone plan. If your plan gives you free, or low cost local calls, and you are in one of these cities, it should be free, or a local call. If your plan gives you free, or local cost national calls that should work too.
Be sure - call your provider, give the number you might be calling, and check the cost for you to call that number.
We want many voices to be heard. If you are a member listed to speak below, the chair will probably expect you to take no more than about 5 minutes on presentation so there is plenty of time for others to respond.
Special Guest Speakers are invited to speak for 10-15 minutes, then field questions.
House - radio, TV, computer, pets, other phones, conversation Yourself - mute button, or mouthpiece away from mouth Phone - call waiting off (#43#), Mute button or hang up to leave the room. No mute button? ##4 to mute, ##5 to unmute. Cordless phone - don't carry, put on folded handkerchief to limit reverberation Other calls - Please do NOT use call waiting or another line on the same phone to take another call - members around Australia are left listening to your 'hold' music until you return.
Please do NOT use a speaker phone, unless you are very good at keeping it Mute, and at lifting and using the hand piece when you wish to join in the conversation. Mobile phone
You will need enough charge for the length of the call, or take the call with your charger plugged in. Speaking Speak clearly into mouthpiece in ordinary voice.
Say who you are when signing in, and each time you speak.
Listen for the gavel. The Chair may need to interrupt.
It's a meeting of 20 people, not a simple phone conversation. If you are not one of the two people in the particular conversation at the time, keep your mute button down and let others contribute.
Help the secretary by later emailing details for the minutes.Restarting You may hang up and sign in again as many times as necessary. Sometimes we may have to restart the meeting - dial in again. With everyone calling at once you may need to try more than once.
Future phone-in support group meetings
Fourth Friday of each month, except:
January (one week late for Australia Day, making 2 meetings in February), and
December (one week early for Christmas).
Phone-in support group meeting dates 2018
June 22 (not the last Friday)
August 24 (not the last Friday)
November 23 (not the last Friday)
December 14 (one week early for Christmas)
Changes or questions
If you wish to update us about any changes in your health or treatment, or have a question you would like answered or discussed, or you would like to talk about joining a teleconference group, let us know. Then we can put it high on the agenda so it doesn't get lost - just reply to this email, or use Contact Jim on JimJimJimJim.com.
This message has been sent to you because you are a member of the Australian Advanced Prostate Cancer Support Group.
Visit JimJimJimJim.com and click on Contact Jim if this is a problem.
Going to the PCFA Community Conversations event this Friday 25 May 2018?
Keep an eye out for fellow Advanced Group members.
Easiest to spot will be David Abrahams (Toowoomba, Qld) as he is brought forward around lunch time to be honoured with the Max Gardner award for distinguished service.
Also in the audience will be executive management committee members Barry Elderfield (Melbourne, Vic), Alan Barlee (Geelong, Vic) and Nev Black (Postmans Ridge, Qld).
Thanks Jim - I'm sure I speak for all when I say we appreciate your efforts and the time you put into attending these functions.A job well done!
The availability of treatments such as Xofigo and other radio pharmaceuticals such as Lutetium177 to a large degree is going to rely on our ability as a group to encourage politicians to support our efforts to get the problems associated with PBS listing and the accompanying legislation needed for handling radio active treatments sorted out and this wont happen without incessant lobbing by our committee and members.
If we want these treatments we will have to learn to be an a more effective lobby group - and all do our bit to get our politicians to become more aware of our plight.
Lets get to it fellas.
In front of a sign reading "Finding a pathway for radiation pharma, Dr Andrew Laming MP, member for Bowman, Peter Duffy, PCFA Queensland Manager, Professor Judith Clements, PCFA National Board member, Prime Minister Malcolm Turnbull, MP, and Jim Marshall, Convenor of the Australian Advanced Prostate Cancer Support Group.
New legislation needs to be passed so a new class of radioactive drugs can be supplied on the PBS. Evidence to date supports one drug in this class - Xofigo (Radium-223). The legislation will allow other drugs of this kind to be added when supported by evidence.
Supplying radioactive drugs through the PBS will be highly complex, and there was a long delay before a way forward could be found. That process is proceeding.
Jim told the Prime Minister that praise rested with Dr Laming, who was able to combine his professional medical knowledge with his knowledge of legislation to propose a way forward to the Health Minister.
Members will be pleased to hear that the Prime Minister was well on top of the issue, and said: "We need to get this through by the end of the year".
PS: Dr Laming happens to be holding a PCFA Advanced Prostate Cancer pack. Members Jim Marshall and Tony Maxwell contributed to this pack a few years ago. Downloadable PDFs of the pack pamphlets are available on our site at: http://www.jimjimjimjim.com/advanced-pack-pdfs.html